thanks for the directions to the calculator. And yes probability odds are useful but not definitive. I am very happy to say the first cysto showed no signs of recurrence. However, I was told by my surgeon I was in a small minority of men under 50 to be diagnosed with bladder cancer, I was extremely unlucky to suffer retention and most recently very unfortunate to have stones encrusted into the former site of the cancer. So I guess I will never get ahead of myself as far as predicting the future goes! Has anybody else known a case where debris has embedded itself into the open wound, here at the base of the bladder. To have the surface of that area possibly removed again with all the experience I now have about the consequences of this is not particularly heartwarming!
Although a recur at 3 months is usually a sign that the tumors will continue to recur, I have to say my sister had a recur of her TaG1 tumor at 3 months and again later in the year-BUT..she has been clean for about 8 years straight now! There's always hope that they stop coming. And who knows, maybe it got missed the first time...since the advent of the blue light cystoscopy(Hexvix), papillary tumors that were missed with white light show up under blue. Happy to say this tool is gaining ground in Europe, still in phase III trials in the US (and Canada I think).
When I clicked on your link and got the download box, I ran the file and the window opened with a bunch of Greek looking alphabet. If I have time on my lunch hour, I will try to go to a public computer and see if I can download there. We are not allowed to use our PC's at work for personal stuff.
I would be interested to know what my "calculated" risk would be. I'm guessing it to be about 50/50.
Thanks for being a bud.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
I had a neg cysto 3 months after my first TURB, but went positive for the next two (two more TURBS). I have had 3 neg cystos since my last TURB, but had pos cytology - haven't found any other cancer. I am fortunate that my tumors have all been superficial TaG1 papillary tumors (5-10% chance of progression to more invasive) and I am doing BCG, which I hope helps as well.
I like Rosemary's post with the calculator (but I haven't tried it). Personally, I am just aiming for the 2 year neg mark to go to 6 month check-ups. I take it 3 months at a time, stay positive, and try not to focus on the smaller progression statistics for my type of cancer.
Hope this helps and that all goes well with your scheduled cysto.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment